Tag: absence seizure

Beta Testing Empatica’s Embrace “Seizure Monitoring” Watch

embraceboxI was lucky enough to never have to take home economics in high school. I don’t really know what was taught in those classes, but I’ve read enough books and have watched enough television to know that there was a possibility that I would have been saddled with an egg, flour sack or an electronic doll for a week to practice being an unwed teen mother.

And I would have failed horribly.

I began beta-testing Empatica’s Embrace seizure alert watch at the end of February and since then have gotten lots of response, questions and comments from other Empatica funders, those with seizure disorders and otherwise, trying to figure out how I got this sweet gig and how they can get a hold of one of these babies themselves. First of all, let me explain what beta-testing is and why you shouldn’t be jealous of me.

Being a beta tester has been more of a commitment than I realized that it would be, but I have been absolutely committed to my uncompensated position. Why? Because the better they are able to make this product, the closer they can get to get it recognized as a medical device and not just as a wearable technology. As I am writing this, they have just begun the clinical testing to begin the approval process to have this device recognized by neurologists and medical institutions all while the beta-testers like myself are fumbling through the clunky beta software and giving feedback when applicable.

I have adjusted my lifestyle to accommodate being tethered to a Bluetooth-dependent watch, but it hasn’t been a completely terrible experience!

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Being codependent and sending texts without being cognizant of it!

This is basically a “protoype” or kind of like a “dress rehearsal” so to speak. It’s not yet ready to be available on the market, but the company needs live testing with people who have the disorders in which they are trying to assist and monitor so they can improve the software. Because it’s not a finished model, it doesn’t have the battery capacity of a normal wearable and generally needs to be charged twice a day. I was definitely warned about this when I began the testing process, but it has still taken a little adjustment to get used to the charging cycle, and have killed it on numerous occasions.

I was told that because it’s a test model, I am not allowed to change out the thick, gray elastic strap the watch came with, which loosens with wear so I am constantly cinching it back up. If it is too tight, the diodes rub my skin until raw and peeling. Also, the elastic strap is a silvery gray, porous elastic material. IT might as well be white and velcro as it was begging to become filthy from the day I took it out of the box.

Empatica hasn’t pushed the finished app and I don’t even use the “teaser app” that they released on their blog for people that are waiting for their watches to arrive this summer/fall. I am using a special “beta app” which doesn’t allow me to see any of my own biofeedback. There’s a blurb about the “Empatica Mate” on their website, and that’s what I’m most excited about being able to use once I receive the finished model. This allows the wearer to see how their stress levels fluctuate throughout the day depending on their activities “like commuting by car vs. bike, meeting with your boss vs. a friend, and physical activity.” The final version of the watch will allow the wearer to customize a gentle vibration when their stress level is rising, for instance. I don’t get any of that.

What I have is constant vibrations when I get too far from my cellphone. The watch, like, I assume all wearables, is connected to your smart phone by Bluetooth and you need to have internet access for it to work. I don’t generally carry around my phone with me all the time. This has been a learning curve for me. However, I have made a positive discovery:

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So there’s that. My loss of items has been greatly reduced since I have been wearing this watch over the past six weeks. The Bluetooth range on this model is. . . not so great. Not that Bluetooth has more than a 60 – 100 ft radius anyway. I find that the watch can’t see through skin or walls, so if I’m in the next room the quality of signal decreases dramatically or if I have my wrist tucked under my arm or am sleeping on top of my wrist, I can lose signal just from having body on top of the watch.

A lot of things can set the seizure alert off. And I have the patience and good nature to mark down which ones are false alarms and which ones aren’t. I’ve had to stop in the middle of working with my clients in the middle of workshops due to flailing my hands too grandiosely to excuse myself and text Brad quickly, “Not a seizure” due to an alert going off.

On my birthday, we went mountain biking and the watch sent Brad and called him 17 times with alert messages due to the off-road vibration simulating monoclonal seizures. If my breathing is slightly labored, for instance if I am somewhat agitated or have been running for a short period of time, I’ve had false positives reported. I have even had a false-positive sent when I had secretly gone to 7-11 to get a slurpee one hot afternoon during a long break from work while I was standing in the store tapping the air bubbles out of the frozen confection. So, the device is still a work in progress.

I’ve never been a person to have my cellphone on me at all times. Usually when I’m at work my phone stays on my desk or in my bag unless I need to check it.

Because I’m a damn good employee.

Damn it.

However, over the last several weeks, I have been finding that if I leave my office, even to go to the restroom which is right across the hall, I will go “out of range” which is only slightly annoying as if I’m out of range for too long, the watch will go into “Error” status which won’t auto-restart when I come back in range, unlike the “out of range” status. When I’m in “Error” status, I have to manually go onto my phone and turn the app off and on again and get the watch to reset.

Like I said, not a big deal, but just annoying.

The only feature that is usable by me on this beta watch is the actual “watch” feature. It’s very futuristic with a single white light illuminating the hour and a slowly pulsing blue light showing the minute. Even a co-worker, whom is color-blind was able to read it once I explained the hour vs minute feature.

You may be asking, does it work? Despite my jokes and tales of false positives, I was on vacation a couple weeks ago, walking down a sidewalk on a street in a city I was unfamiliar with, hungry, dizzy and disoriented – next thing I knew, I was being held in Brad’s arm as he was holding my VNS magnet to my hand to help me “swipe” myself for the umpteenth time.

My watch called Brad and notified him that I was going into an partial or absence seizure and was no longer keeping up with him during our walk. He was able to immediately turn around and retrieve my magnet from my ankle to assist me and after a few minutes of postical phase, I was able to continue on!

Am I thrilled?

Yeah. A little.




Article: Cycling with Epilepsy

bsg20130926Back in July I was featured as a Motivational Monday cyclist on Bike Shop Girl. I even wrote an article in response to it. After the initial post, I was asked to write a follow-up article about some of my experiences with epilepsy and cycling.

Well.

That’s where I’m a viking.

So I wrote an article yesterday, she posted it on her website. Just a very matter-of-fact telling of my coming to terms with my diagnosis at the same time I was just beginning a love affair with cycling.

Pretty basic.

After being published on Bike Shop Girl for a mere eight hours, I was contacted by “DisCo: Disability Conversations” asking if it would be okay to republish the article on their site.

I am thrilled with the attention that this is receiving because what I really want it to get across is that there are shitty parts in your life but it isn’t always that way, and it doesn’t always have to be that way.




On the Road Again

I would like to say that I am not very political. I would even like to define myself as “apolitical” but living in a city like Portland, I guess that is kind of a lie. You can’t really live in Portland and not have an opinion. I mean there is a lot of people stumbling around the city saying that they don’t give a shit, but when you get down to it, you know they care about something, even if it just apathetically.

I guess I am apathetic.

Meh.

So, I had the big seizure ten days ago and was told not to ride until I hadn’t had a seizure for about a week. Well, I didn’t have a tonic-clonic seizure for about a week. All in all, it had been about three days since I had noticed absence seizure blipping. Three days, a week – close enough to a week, right?

Right!? 

So, going back to my apoliticalness, I have decided to now categorize myself still vaguely meh, but also as lightheartedly political. I have many friends involved in politics in some very passionate ways, and it almost makes me sad that I can’t be as passionate as they are. But I have my many, many passions and focuses. I care about their issues, but I am not going to drop all of my aspirations and life goals to march to their drums.

Which brings me to the fact that when something does come up that I can get behind I will respond.  I decided I was feeling pretty good despite the fact that I had only gotten less than five hours of sleep. I dressed up like a tooth fairy and dragged myself to the park to meet up with Bike Swarm, a peaceful demonstration group of cyclists, who were meeting prior to the rally. We all discussed talking points for a while, then mounted up on bikes and took a bike ride across town to city hall where we met up and joined the peaceful rally, joining in with all the others.

It was actually a pretty great day. I made a few friends and ran into an old friend. Got to stretch my legs on my tall bike. (Maybe not the best bike for riding after being off a bike for over a week, but who’s picking hairs?) Hung out on the waterfront afterwards. Probably should not have worn high heels, but was thankful that I was thoughtful enough to have brought flat shoes with me for later that day.

If you’re interested, Portland’s mayor is trying to fluoridate the water, but he’s trying to do it without putting it to vote. Just do it. Crazy, right? So, my sign is in reference to Stanley Kubrick’s 1964 “Dr Strangelove” where a character is obsessed with the communist’s fluoridation of the water supply.

I had decided to dress up like a tooth fairy and hand out little handbills I had made with information on well-known brands of toothpastes you can buy anywhere that had fluoride-free options (most having kid-friendly flavors as well) and then on the other side a recipe for homemade toothpaste, why the ingredients were beneficial, and that all the ingredients could be purchased by EBT. (Meaning, in other words, they’re all food products!) I also had a lot of hippie talk of other homeopathic jargon on dental care and diet. The thing is that everyone at the rally was on the same team, so it was a lot of commiserating, mostly.

Unfortunately, that afternoon I went into work and have been suffering a migraine now for the last 20 hours or so I as type this. I assume the lack of sleep, extra energy, warm weather made my brain frizzle out. I am not prone to normal migraines.

Damn my brain.

Otherwise, I had a great day. I figure I am over that hump and back on the road. I might end up calling the neurologist, but only if it persists, otherwise I am going to call it a fluke.

I am thrilled to be back in the saddle again.